Why do you want to label your child?

Guest blog by Lauren Roberts, Coordinator SWAN UK (Syndromes Without a Name).

Young girl in a push chair A controversial new book caught the headlines last week claiming that dyslexia is a meaningless label which holds teachers and parents back from helping children. The Dyslexia Debate claims that testing for dyslexia is merely a waste of time and resources.

While the book is talking specifically about Dyslexia, it raises a more general question that families are often asked – why do you want to label your child? The social model of disability says it is society that disables people, not their impairments. This is very true, but aside from the emotional need for a diagnosis that many parent seek, there are also some very real, practical reasons why diagnosis is important.

1. A diagnosis may offer a prognosis

People are often surprised to learn that around 50 per cent of children currently undergoing genetic testing through the NHS may never get a firm diagnosis. Without a diagnosis families have no sense of what the future might hold. They have no developmental charts to refer to, no idea whether their child will walk or talk, or even what their life expectancy might be. For parents of children with very complex medical needs, the first few months and years can feel like an endless search for answers.

2. A diagnosis opens doors

Boy smilingAlthough support should be based on assessed need, the experience of many families is that without a diagnosis it can be difficult to access support. Without a diagnosis it can be difficult to get people to take your child’s needs seriously – even if they have very obvious difficulties. You have nothing to write in the box on forms that asks for diagnosis and, in a time of budget cuts, a lack of diagnosis can be used as an excuse to deny support.

3. A diagnosis helps predict recurrence

Without a diagnosis it is impossible to test or predict the likelihood of the condition recurring. There is no way to know if future children or grandchildren will be affected – or whether siblings may pass the condition on to their own children.

4. A diagnosis may help direct treatment

Without a diagnosis it can be difficult to know what is the best course of treatment. Some children respond unusually to drugs and have undergone numerous surgical procedures without success.

5. Without a diagnosis you often feel like you don’t fit in

Mum hugging young boyFamilies of children with undiagnosed genetic conditions often feel they don’t belong with other networks or groups that offer support to families of disabled children. They dread having not having an answer for the ‘what’s wrong with them’ question.

SWAN UK (Syndromes without a Name) is an initiative of Genetic Alliance UK offering support and information to families of children with undiagnosed genetic conditions. On Friday 25 April, we will be leading the UK celebrations of Undiagnosed Children’s Day. We’d love you to support us!

Find out more about our It’s a Mystery Day and how you can get involved.

Scope’s Face 2 Face schemes offer emotional and practical support and operate across the UK. Any parent of a disabled child may use their local scheme, even if your child hasn’t been diagnosed.

4 thoughts on “Why do you want to label your child?”

  1. Reblogged this on Nat's Weight Loss Diary and commented:
    This is a fantastic guest blog by the SWAN UK coordinator. She asked SWAN families what a diagnosis wpuld mean for them, and this is what she did with those opinions. It sums it all up really. In the meantime, we all have the support of SWAN UK, the charity I am raising money by losing weight for.

  2. For me I have always said there is a difference between a label and an explanation. The label can be so negative you are lazy, not trying enough, stupid( especially within educational settings ) while in our case the explanation is the faulty connective tissue( Elhers Danlos) causes difficulties with writing, fatigue, impacts on motor skills.
    With regard to the dyslexia I think from what I saw about it is the researchers were trying to say that intervention should occur if a child has difficulty rather than like I hear time and time again oh wait and see, they are doing ok and by then they are in years 5 or 6 and so much time is lost, self esteem in impacted.
    It is all complicated and my real fear is people might translate it into there is no such thing as reading/learning difficulties and just blame the child…..

  3. fantastic to read, i have four children, my eldest is dyslexic, my two middle children are academic and my youngest has a genetic disorder but doesn’t fall into any boxes. my first battle was trying to get a statement for my youngest child so he could attend special school. i was lucky and found IPSE and SCOPE. without a diagnosis it was an uphill struggle and nearly broke me. eventually after collating all the reports myself i threatened to take the LEA to court. the LEA wanted to put my child with his father who had left the family as he couldn’t cope with a disabled child so he could attend a mainstream school. with a diagnosis, i think i would have avoided 2 years of continuous battles, pressure you do not need when you are trying to bring up a family with a special child and work.
    i have had the pleasure of being told that my child’s failure to thrive was due to my breast milk, and listened to a consultant tell me i liked ‘labels’.
    i have no idea of how my child will develop, his life expectancy or the genetic implications for my other children. if i knew his life wasn’t long, i would sell the house and take him to disneyland and do all the wonderful things i plan to do over the years. i wouldn’t be working and juggling childcare for him.
    like many parents, i don’t get any help with him, and although it isn’t too hard at the moment, i do not know how i will cope during puberty and dealing with his personal care. would i get help with a diagnosis, possibly, i don’t know? he has learning disabilities, his fine motor skills are very poor, he appears to have a left sided weakness and very small genitals. he has an insatiable appetite and has been tested for prada willi but it was negative.
    i suppose my eldest son’s dyslexia pales compared to my youngest child, and he has learnt coping strategies, but that is due to his mental capacity and a deep understanding of dyslexia. being told dyslexia doesn’t exist is not helpful, as now most people are aware that some people struggle with reading and know they are not ‘stupid’.
    labels help you get the support you need, but more importantly, a label would help me out when i’m with my special little man to explain his behaviour or to allow us a little more time to achieve our goals.

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